By Lisa Ackerman
As the family walked away I heard Kenny say “She must really like kids.”
He’s right, I do. If I am at a conference, gathering or event and there are kids around, you can find me interacting with the kids. I like hanging out, chatting and playing with them. You could say that I am just a big kid!
This was a family of six – four adorable boys and two parents who had stopped by to say hi at an autism conference. One of the boys has autism. I spent most of my time laughing it up with all four boys.
I remember many moments seeing kids at TACA events. At one family event, I leaned over to say to say hi to a pre-verbal 10 year old girl. She grabbed my hair and pulled me closer. Yes, my head was hurting and my first instinct was to pull away fast, but I tried to resist the urge. As I was less than two inches from her face, I whispered to her “You must really like hair. You have my hair pretty tight in your hands. Could you please let go?” She immediately let go and smiled. I leaned back down in the same close proximity to her face as before, smiled back, and told her I was glad to see her.
A lot of the friends I meet and hang with have autism. I know a lot about my friends. They don’t always do what you expect. Even as a parent of a child with autism, there are many behaviors that can still surprise me.
Some of my friends have remarkable characteristics and behaviors. I share these with you in case you read this blog and are unaware of this type of information. The uniqueness of each individual with autism is just that – unique.
Here is a sampling of the different characteristics in autism that I have witnessed over the years:
– They have no sense of danger.
– They do not respond to their name being called.
– They run from strangers – even strangers who are trying to help.
– They are afraid of loud sounds or bright lights – like police cars.
– They really like to play in water – many are not water-safe and cannot swim.
– If they have an idea, they want to get on with it right away.
– Many can open almost any lock. They can also escape from almost any enclosed space. They seem more equipped than Harry Houdini in their ability to escape just about any situation.
– They live in a persistent fight versus flight mode. It’s very hard to predict what they will do next.
This list does not apply to all individuals living with autism, but for some families this list can be a very real part of their lives.
At one point in time, my son had all these issues. There were several times I lost track of him. My heart exploded out of my chest during the brief times before he was found safe. Seconds felt like hours.
I recall one instance when I pulled him out of his car seat and accidentally dropped my keys. In the seconds it took to reach down to grab the keys, my son began running through the crowded parking lot. I took off after him. I already had tears streaming down my face as I was screaming his name asking him to stop. He did not respond to my commands. As I grabbed the scruff of his shirt, he had been milliseconds away from being hit by a car speeding through the parking lot. You see, he had just wanted to get into the store we talked about to do the thing I had already forgotten about. All I could remember was that he had been just moments away from a serious accident. He had no idea of my state of panic. This entire episode had lasted less than 60 seconds. Seconds that could have changed our lives forever. There are thousands of stories like mine.
I just recently talked to a mom about her teenager (with the mental capacity of a 4 year old) who had wandered away while getting her purse to get in the car. She wanted to go buy the pizza he had earned as a reward for his week of hard work. Within minutes, her son was found about to walk onto a major freeway; seconds again before another tragedy. There are dozens of these close call stories every month reported to TACA.
There are millions of kids like this living in the United States. They have a diagnosis of autism. Some of these kids accidentally wander away from their parents. Parents turn away for just seconds to do something, like quickly use the restroom while someone else is keeping an eye on the kid, and suddenly the kid is gone.
Many of these children can have the cognitive functioning of a toddler but the size of a child that should know better. But they don’t, they have autism.
The statistics are sobering, 49% of the kids with autism wander (1) and sometimes with deadly consequences. Many of the kids that wander cannot speak which makes finding them even more difficult. Many are scared of the bright lights, sounds and commotion around them. They are afraid of the sounds and people there to help them.
This past week, three kids diagnosed with autism lost their lives. Mikaela (2), Owen (3) and Drew (4) wandered from their families and died. These sweet angels went towards water. They drowned before they could be saved. I cannot imagine how these families feel after losing a beautiful child who had no concept of safety.
My heart aches when I read a news story of a child who has gone missing. Since Mikaela, Owen and Drew died, two more kids have wandered, but were thankfully found before another tragedy occurred.
We need an Amber Alert system for situations involving children with special needs who wander. We need to gather authorities and in most cases, head for local bodies of water. As parents of children with autism, we know that we should always look at any nearby areas with water FIRST.
What can parents of children with autism do? Our incredible friends at the National Autism Association have done a wonderful job telling families what can be done. Here is a summary:
– Parent tag system: When you have a child with autism, play parent “tag.” If a parent or adult is on alert they are “tagged” and now on duty to watch and keep the child safe. While being “tagged”, they should not leave or take their eyes off that child, not even for a second. They are on duty to watch and observe the child at all times. If they need a break they need to “tag” the next adult for their turn to be on watch. At every family event or function someone needs to be the “tagged” adult.
– Secure the home: Security for families living with autism is key. Door locks and alarms are must. Families living with autism can request the Big Red Safety Box from the National Autism Association.
– Leaving your home: If you go on vacation, it is important to use the same approaches you do at home. Bring similar locks and alarms with you.
In one week, Mikaela, Owen and Drew were lost in what appears to have been in a “blink of an eye”. In the news, we have seen an average of 3 children with autism wander each month. What about the ones that don’t make the news? The close calls? Losing a beautiful child is a tragic outcome no one should have to experience. Families living with autism have this huge fear in the back of their heads daily.
I hope you now understand why we fight so hard for our kids. We like kids. No, we love these kids. We fight for therapy, medical intervention and understanding because if they get away from us just for one second, tragedy can ensue. We work hard in hopes that someday our kids will understand safety and not need to be closely guarded. As parents, we have to do something to keep our babies safe. Our communities must understand we are loving parents living under extraordinary circumstances. It takes a village to protect these children. They shouldn’t face tragic circumstances. They deserve to reach their full potential.
1) Autism Safety Box from National Autism Association: www.autismsafety.org
Editors note: I could not locate a picture of Drew Howell. If we locate one, we will share.
UPDATED NOTE: May 30, 2013 – With heavy hearts, we have learned that Freddie Williams wandered away from home toward water and drowned. In the last 10 days, four children: Drew, Mikeala, Owen and now Freddie wandered away and have died.
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